(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

Hello Kay!
I am on my fourth month of a year long antibiotic therapy for MAC. I have been advised to take 3 antibiotics on Monday, Wednesday and Friday.
Rifampin is supposed to be taken on an empty stomach. So I take it first thing in the morning, with at least 12 ounces of water.
I then divide my other two antibiotics between breakfast and lunch. My pulmonologist did not specify exactly how the doses should be administered. What I found is, if taken all at once, I suffer severe acid reflux as a result. I wait at least one hour prior to exercise after taking the medications also.
The other two antibiotics for me are Clarithromycin and Ethambutol. I divide both doses between breakfast and lunch, so that by noon I have taken my daily dose of all three without significant disruption to my daily activities. I have experienced no sleep disruptions with this routine. Lying down or bending over after taking the meds causes reflux for me. That is why I avoid taking the meds in the evening. I do take my probiotics in the evening, with dinner.
Best of luck to you in finding what works best for your regimen!
Liliane

REPLY

Liliane
Thanks for explaining your regime and issues with meds. I’ll do a variation. Funny I get no reflux but insomnia and nausea which came on over the first week. I have cavitary MAC so need daily 3. It’s a lot of pills and the doc said my body has to get used to them

Continue to do good. I take it you have some sort of MAC. I know some types are 3 days per week.

This is a great website full of support which we all need.

Kay

REPLY

Hi Kay, I was on the big 3, 3 days a week for 18 months, but from Monday am going onto them daily also, I too have a cavitary, had a few morecavities but they have gone and only left one now. I am hoping because the dose for daily is less at once it will not have too much of an effect, Bring it on!( I think haha).

REPLY
@heathert

Hi Kay, I was on the big 3, 3 days a week for 18 months, but from Monday am going onto them daily also, I too have a cavitary, had a few morecavities but they have gone and only left one now. I am hoping because the dose for daily is less at once it will not have too much of an effect, Bring it on!( I think haha).

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Heather
My dosage is 1200 Ethambutol (3 pills) 600 Rifampin(2 pills) and 125 azthromycin (1 pill) daily. I was to take them all at dinner w exception of Rifampin 2 hours after. Due to sleep problems the last 2 nights, Rifampim in AM now 2 hours after breakfast.

I was doing fine but last night could not sleep and got really nauseated. Called the doc and she said to take them differently. She said it’s a huge load of meds and to stick with it and side effects will subside.

How much will you be taking? That is so great your other cavities are gone with one left. I have one big cavity. Stories like yours make me hopeful.

Did you have side effects and how long do they last? It seems some people take them easily and others have a rougher time. I never get nausea so this is new to me. It goes away intermittently and I eat but at this rate I will lose weight I really don’t want to lose. All my life I ate healthy to stay at a good BMI. Now struggling to hold weight on! Crazy.

I’m starting to do favorites and trying to figure out this site. It helps to hear stories like yours. And your attitude is great.

Kay

REPLY

Hi Kay, I pick my new daily meds up from the chemist on monday, I think its, 250 azith, 900 etham, 600rifam, will let you know when I get them, might google it myself and see what I think I should be on, ours seem different quite different.

I felt nauseous for a while also when I started on 3 a week but cant remember how long for, I had gin gin lollies and ginger and licorice tea every meal which helped a lot. I remember just feeling off colour and very tired(asleep on sofa at 10.30 am) as I was taking them with breakfast so moved them up to lunchtime. I take rifamp 4 hours after breaky , then have lunch 40 min later, then rest of meds together . I tried to take them all at night but had bad tummy trouble, so now I like to drink lots during the day while taking them.

My GERD has caused me to lose weight which is a pain. When I get my daily meds I may take a few with dinner also to spread them out more.

Yes great that most cavities and nodules disappeared , just need the last cavity to go now so have upped meds to daily I also still have some nodules but they dont seem as worried about them. Do you have nodules ?

My specialist has just said that they find people with Mac are also getting a fungus in their lungs(began with an A I think) so I am having tests for that now too. May pay to ask your docs too.

I know that I need to stay positive from now on so we need to do this together, and kick this thing in the posterior! Do you have facebook? we could chat if you want. We sound very similar and in the same position at the moment.

Take care and hope all goes great for you.

Heather

REPLY

Heather
Yes, I think we can be supportive to each other.

I’m under. Kay Strand. Eden Praire Minnesota. Let me know if that works. Just friend me. That will be fun to see each other away from the stupid MAC.

I feel much better tonight. Took the start of azithromycin tonight and my Ethanutol – I think it’s the Rifamtin that kicks my butt, but hope nor for long. Mayo has you build up to full dose, I would have been in really bad shape I think. The doc emailed me that it will take a few weeks for my body to adjust to all the meds. This morning I felt awful. 2 hours sleep, shaky and nauseated. I didn’t eat much but I think I’m back on the horse. There will be bad days I need to get through. My poor partner Jeff, I feel like I’m wearing him out. It’s so good I have you and one other similar woman to talk to. It really helps!

I have 1 cavity in upper right lung, they are aggressive with that area. I had pneumonia last Dec and they gave me a cat scan for a spot in my xray. When it was still there in June I had a bronchoscopy and lavage and they found MAC. They did test for tons of fungus, all negative for all except MAC. What a shocker to get a weird disease, some days I’m still down, but my life is good otherwise so I’m going to really work to get past this with whatever the Mayo wants to do.

Anyway, we watched a bit of Olympics and a movie and I’m going to try to do Pilates tomorrow. Playing it by ear.

Enjoy your evening and I’ll watch for you to Facebook me. Take care, we can help each other which is good!!

Kay

REPLY

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

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Good morning sorry u are having problems sleeping. I have always had problems sleeping even before taking any of this stuff. I do feel better since starting mrds though and i pray a lot. That helps better than anything.

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Katherine
Very helpful. I’m also taking R in AM now to help with my sleep ( since taking it at night kept me up) . The doc said to skip it last night and take this AM. I slept 100% better.

I really appreciate all your notes. You are very organized. I’m printing them for my file and will try different stuff till I feel better. Looks like nausea will be my main problem and many people have said it lessens as your body gets used to all the meds. Hoping so. Getting some ginger tea today!

Hope your day is great, thanks again
Kay S

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

I didn’t realize until reading posts yesterday, and checking on the internet, that the Rifampin shouldn’t be taken with food.  I’ve always taken it after eating breakfast as my instructions on the rx label didn’t say anything and dr and pharm both said to avoid nausa take with food.  My dr has also told me I have to take all 3 the same day or take none at all that day…like if I have a procedure done that would prevent me from taking morning meds.  Just thought I’d share my experiences.

REPLY
@kaystrand

Heather
Yes, I think we can be supportive to each other.

I’m under. Kay Strand. Eden Praire Minnesota. Let me know if that works. Just friend me. That will be fun to see each other away from the stupid MAC.

I feel much better tonight. Took the start of azithromycin tonight and my Ethanutol – I think it’s the Rifamtin that kicks my butt, but hope nor for long. Mayo has you build up to full dose, I would have been in really bad shape I think. The doc emailed me that it will take a few weeks for my body to adjust to all the meds. This morning I felt awful. 2 hours sleep, shaky and nauseated. I didn’t eat much but I think I’m back on the horse. There will be bad days I need to get through. My poor partner Jeff, I feel like I’m wearing him out. It’s so good I have you and one other similar woman to talk to. It really helps!

I have 1 cavity in upper right lung, they are aggressive with that area. I had pneumonia last Dec and they gave me a cat scan for a spot in my xray. When it was still there in June I had a bronchoscopy and lavage and they found MAC. They did test for tons of fungus, all negative for all except MAC. What a shocker to get a weird disease, some days I’m still down, but my life is good otherwise so I’m going to really work to get past this with whatever the Mayo wants to do.

Anyway, we watched a bit of Olympics and a movie and I’m going to try to do Pilates tomorrow. Playing it by ear.

Enjoy your evening and I’ll watch for you to Facebook me. Take care, we can help each other which is good!!

Kay

Jump to this post

Hi @kaystrand, You’ll notice that I removed your private phone number and email address. For your safety, we recommend using the private message function rather that publicly sharing your personal contact information. This will spare your getting unwanted spam etc.

Here’s how to private message another Connect member.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Happy connecting 🙂

REPLY
@kaystrand

Heather
Yes, I think we can be supportive to each other.

I’m under. Kay Strand. Eden Praire Minnesota. Let me know if that works. Just friend me. That will be fun to see each other away from the stupid MAC.

I feel much better tonight. Took the start of azithromycin tonight and my Ethanutol – I think it’s the Rifamtin that kicks my butt, but hope nor for long. Mayo has you build up to full dose, I would have been in really bad shape I think. The doc emailed me that it will take a few weeks for my body to adjust to all the meds. This morning I felt awful. 2 hours sleep, shaky and nauseated. I didn’t eat much but I think I’m back on the horse. There will be bad days I need to get through. My poor partner Jeff, I feel like I’m wearing him out. It’s so good I have you and one other similar woman to talk to. It really helps!

I have 1 cavity in upper right lung, they are aggressive with that area. I had pneumonia last Dec and they gave me a cat scan for a spot in my xray. When it was still there in June I had a bronchoscopy and lavage and they found MAC. They did test for tons of fungus, all negative for all except MAC. What a shocker to get a weird disease, some days I’m still down, but my life is good otherwise so I’m going to really work to get past this with whatever the Mayo wants to do.

Anyway, we watched a bit of Olympics and a movie and I’m going to try to do Pilates tomorrow. Playing it by ear.

Enjoy your evening and I’ll watch for you to Facebook me. Take care, we can help each other which is good!!

Kay

Jump to this post

I thought I was sending a private message, thanks for fixing!

REPLY
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